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Episode 20: How Brooke Ellison Maintains Dignity and Individuality as a Full-Time Care Recipient

Caregivers Out Loud

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How would you retain your sense of self if you required full-time care?

When Brooke Ellison was 11 years old, a car accident left her a ventilator-dependent quadriplegic. Her mother Jean stepped into the role of full-time caregiver, and their familial and caregiving relationship balance has continued for over thirty years.

Dr. Brooke Ellison graduated from Harvard, wrote two memoirs, and is a frequent public speaker on resilience, leadership, and hope. In this episode, she reflects on her experiences as a care recipient—both then and now. Specifically, Brooke shares how she navigates disability and how her definition of this term has changed and grown over the years.

Brooke shares what care feels like from the other side of the table:

  • Why building a routine is so important when unpredictability is unavoidable
  • How Brooke’s concept of disability as vulnerability has changed over the years
  • The challenge of finding alone time when care needs are so pervasive
  • Considering and communicating about the future despite its uncertainty

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Quotes

  • It’s hard when you’re completely dependent on somebody else for all aspects of your life. And it took me a long, really long time to understand that I could maintain my own sense of dignity and individuality while also being a care recipient to the magnitude that I’ve been receiving care for all these years.
  • When I was a child, I wanted the care from my mother and not from anybody who could be construed as making me into a patient. I’ve grown and matured over the years to concede things differently and understand my disability as a source of strength, actually much more so than a source of weakness or vulnerability. And I’ve derived a tremendous amount from the lessons that my disability have taught me over all these years.
  • I could never sufficiently offer gratitude for that. But I hope they know how very much I understand that and appreciate that and know that my life would have ended a long time ago were it not for their involvement in my life. And I think that’s the case probably from any people who receive care, that sometimes their gratitude is so immense it can’t even be described.

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Transcript

[MUSIC IN // INTRO]

VOICE-OVER: You’re listening to “Caregivers Out Loud”, powered by Family Caregivers of British Columbia and hosted by Bill Israel.

[MUSIC DEVELOPS]

BILL: Everyone requires care. But what does care look like when the body is fragile and broken, requiring constant care from your own mother? So much of our life is unpredictable, but even more so when complications arise from needing full-time care.

In our previous episode, we heard from Jean Ellison, the caregiver to her daughter Brooke, who became a ventilator-dependent quadriplegic after being hit by a car on her first day of Grade 7 in 1990. If you haven’t heard Jean’s story yet, press pause on this episode and listen to the part one first.

[MUSIC CONTINUES]

Imagine wondering if you’d ever leave the hospital after being paralyzed from the neck down. Would things ever improve? What would the future look like?

Dr. Brooke Ellison shows us that anything is possible, as she shares her side of this love story. From navigating adolescence while being on the receiving end of care, to learning how to thrive in a vulnerable position, while maintaining her own sense of dignity, individuality and personal agency.

Brooke’s new life was reimagined at age 11. Ten years later, she graduated magna cum laude from Harvard University with a degree in cognitive neuroscience. At the age of 23, she wrote the memoir Miracles Happen, which was adapted into the Christopher Reeves directed movie The Brooke Ellison Story. Today, she’s the author of a new memoir, Looked Both Ways, reflecting on her personal struggles and how she thrived in more than 31 years as a woman with quadriplegia. Let’s go back to when Brooke was a young child, trying to grasp the situation.

[MUSIC FADES]

BROOKE: Yeah, so I didn’t have a full understanding of the magnitude, uh, or longevity of my need for that kind of intense care. I thought, this is kind of a story I’ve recounted several times that I remember lying in my hospital bed in pediatric intensive care, thinking and this was the early autumn of 1990, thinking that I would be able to get up and walk out of my bed and out of the hospital the same way that I came in. It was just going to be a matter of time that I’d be home by Christmas and be out playing with my brother and sister on the living room floor like we had always done. That was just how I had envisioned things. But receiving care, especially the kind of it’s hard to understand what it feels like to be on the receiving end of care, or be the care recipient, um, until you actually are in that position, vulnerable position to be in.

Right? There is a tremendous amount of giving up of one’s own identity sometimes, or feeling, um, autonomy and personhood. As I’ve gotten older, and an additional number of people have come into my life to help offer care or support my mother in various ways, like, that’s been difficult to say, okay, I’m going to let somebody else do things that are the most intimate parts of your day. You know, removal of oneself from parts of your life that you wouldn’t typically ever want to remove yourself from. And that’s hard. I remember also, I was living on the ventilator, I’m breathing through the assistance of a machine. And I remember so vividly being in the hospital and wanting to have human contact and human assistance and feeling like that was a safer and more reliable way to breathe or to be cared for than through, you know, machine intervention. I remember that so vividly. I was like, I wanted people to breathe for me using an Ambu Bag as opposed to being on the ventilator, because I felt like that was safer and more secure.

BILL: You’re looking for a human touch there.

BROOKE: Right. Exactly right. And it’s hard when you’re completely dependent on somebody else for all aspects of your life. And it took me a long, really long time to understand that I could maintain my own sense of dignity and individuality while also being a care recipient to the magnitude that I’ve been receiving care for all these years.

[MUSIC IN]

BILL: The complexity of this situation creates mental, emotional, and spiritual stress that’s difficult to anticipate. Yet, here it is. In many situations, and just like for Brooke, dependence on a caregiver can play out successfully when there is a strong foundation.

[MUSIC OUT]

BROOKE: In many ways, when you’re on the receiving end of care, the intensity of that care can ebb and flow and change over time. So there are a stretch of years immediately following my accident where we just had to gain our footing. We had to get a sense of what are all these things that are going on? How can we approach this situation in a way that’s going to make sense for everybody and a life that’s livable and move forward and make sure that we’re also aware of the needs of my sister and my brother and my father, that we’re all working towards the same goal. That took a long time. That took a while to get into motion and for everybody to feel like we were a family again. Right? Even though we were operating differently, we were a family nonetheless. So that took a while. Then there was this kind of plateau where things were steady on an even keel and um, we had our routines. Getting things to the point of being very routinized was very helpful. Right? So, we knew what we were doing at any given part of the day and having, in a predictable pattern, alleviated a lot of anxiety around them because you know what comes next and there’s security to be found in keeping things unregimented.

It makes it a little bit easier for when times are more challenging. Right. So over the course of the past several years, my health has been difficult. It’s been compromised considerably from different infections that I have been battling and kind of comorbidities and secondary, um, occurrences as a result of living with quadriplegia for as long as I have lived with it. So navigating those has been more difficult. But we have a very strong base to build off of.

BILL: Beautiful. And my sense is that predictability becomes a high priority, you know, in the next hour, in the next day, what’s going to take place.

BROOKE: Right, so much of our lives is unpredictable. So much of our lives can change at any minute. Or how my health might be on one day, or how everybody’s feeling on another day. Or just wheelchair complications. Technology that doesn’t work the way it’s supposed to. All of those things are unpredictable. Right? They are the predictable, unpredictables. But we want as many predictable, predictables as we can. When that change happened or was told that, no, you’re not going to be leaving, I just, I didn’t think I was ever going to leave the hospital. Oh my goodness. It was terrible. I remember just sobbing when I found out.

[MUSIC IN]

BILL: Coping with emotional experiences is an ongoing process that requires a shift in mindset. It’s not an either/or situation. In those early days, yes, there is a loss of control, along with anger and grief. And there is also an opportunity, the possibility to learn, teach, and make space for everyone to grow even closer together as a family.

[MUSIC OUT]

BROOKE: My parents were very solicitous. So made very aware of the magnitude of, um, the losses that I had sustained. They wanted me as deeply involved in the decision making processes and how things were going to continue to move forward as I could be. So much so that my mother’s first day of work as a special education teacher was the day of my accident. Right? So those two things happened, uh, at the very same time. My mother left her job that day and stayed with me for the duration of the time I was in intensive care. And the seven and a half months that I was in rehabilitation in New Jersey. Right? So the next day over, she stayed with family members, um, nearby so she could be with me every day, because she knew how important that was to me. She didn’t necessarily even have to ask. She knew and decided to change her life completely to do that. And then when I returned home from the hospital, I was supposed to return to school that following September. 

So I returned home in May, um, of 1991 and was supposed to start school in that following September. And for the same issue, a nursing related issue and the lack of ability to get, uh, the kinds of care, outside sources of care, my mother decided to leave her job completely, right. So take a temporary leave of absence and turn it into a permanent leave of absence. So she left her job to go with me to school so she could provide the care that I needed so I could be a student. So that was a big decision. Right? That was completely to defer to me to make sure that I could have the care that I needed and still move on with my life.

BILL: Yeah. And so one of the issues that we talked about this earlier, about your need to be responsive to the care required for your moving forward, but without the label of being disabled. Obviously your mom was doing a good job of keeping you engaged in the decision making process. But what was going on in your mind and heart, uh, in this process as you were beginning to move forward now and, um, perhaps seeing the long distance implications here of making sure your voice was being heard in this process?

BROOKE: Yeah, yeah, I suppose I could think initially at the time that I was discharged from the hospital and not knowing what my future was going to look like and being very opposed to being understood as a person with a disability. Right. I was the product of the times, just like everybody else was thinking that my disability was going to be a source of vulnerability or make me a weaker person, or a person to be pitied or looked down upon. I did not want any of that. I wanted people to see me for who I believed I was and am and didn’t want to think about any of the unnecessary parts of disability or the medically related parts of disability. I knew that I had to have them done. I knew that they were going to be a part of my life moving forward, but I didn’t want to think about them. And I had a bit of resistance to kind of nursing in general by title, because I didn’t want to be construed as a patient all the time. Right. The counterpoint of the, uh, nurse is patient. Right? I didn’t want to think about my life in those terms that I was somebody who was sick or unwell. 

So that made me much more comfortable being around my mother as the caregiver. Right? Kind of the natural caregiver to anybody my age is the maternal figures. That keep a little bit of a complicating issue, to be quite frank. Um, when I was a child, I wanted the care from my mother and not from anybody who could be construed as making me into a patient. I’ve grown and matured over the years to concede things differently and understand my disability as a source of strength, actually much more so than a source of weakness or vulnerability. And I’ve derived a tremendous amount from the lessons that my disability have taught me over all these years. So I understand things much differently than I ever did before, and for that, I’m very thankful. But I think that’s an important lesson for people who are in the receipt of care that doesn’t necessarily define who you are. And you can still be, um, an important contributor to conversations and to the world. Um, if you understand your role in that way. And it’s not a life to be fearful of. Everybody requires care in some way, shape or form, and you’re not a lesser person if you need it. 

[MUSIC IN]

BILL: As we’ve already heard, having your own mother as a caregiver presents a lot of unique challenges. But as you listen further, these difficulties during care can create pivot points that lead to change. When the focus shifts away from the details of the problem, solutions can arise. 

[MUSIC OUT]

BROOKE: We have willingness to see it happen. The circumstances haven’t presented themselves where it’s been fruitful, unfortunately, which is a major source of frustration and stress and tremendous stress. Right? Like that, I think it’s a critical point that, uh, when you are a caregiver or a care recipient, uh, there’s a lot of responsibility and fear that is found in it. Right. And that’s to be expected. And any ways that you can mitigate those or put into place, you know, fail safe mechanisms or stop gap measures is to your benefit and can alleviate a lot of concern. That’s what we’ve been trying to do. And it’s been difficult to find the right people or the people who are willing to step in if required.

BILL:  Yeah. So many caregivers understand that that as badly as I would need some respite, I’d like to get some sleep. Explaining what needs to be done to somebody takes longer than me just doing it.

BROOKE: Yeah. Especially if there are different people, multiple people coming in in one day to learn what the ropes are. It takes a really long time, and sometimes you have it in you to do that, okay, I’ll just do it myself. Or keep things as they are. Like, there’s comfort and predictability, comfort and stability. And to jostle that around can sometimes be just too much.

BILL: Yeah. So, Brooke, from your standpoint, are there times when you have to say, look, here’s what’s going on now, and I need some respite myself? There are some things that I need different what’s going on, or some things that I realize that I’m stressing my caregiver. Those can be what I call tension points about how we need to talk about how we can proceed with this and not get upset and, uh, not end up with bad feelings about it. Do you experience any of that?

BROOKE: Absolutely. Yeah. Those are difficult conversations to have. Right. Because it is often not at all with anybody at fault. People want and deserve their privacy, but when you are the recipient of such an immense amount of care, it’s hard to find those times of privacy. And that can be really difficult. That can be very taxing on an individual. That’s something that I have experienced, you know, many times. I can’t just say, I’m going to go for a drive and clear my head, or I’m going to take a shower and clear my head, clear my mind, or just go in the other room. I can’t do any of those things. That’s really hard. That has been one of the biggest, um, adjustments that I’ve had to undergo for the past 33 years now. And I still don’t still times where it feels like people don’t necessarily understand or people don’t get how strenuous it can be on somebody’s resolve when you don’t have any time to just step away.

BILL: So, uh, going forward now, how do you converse about the future? You know, six months from now, two, uh, years from now? Do you have those conversations?

BROOKE: Yes. Particularly lately. There’s a fine line between getting yourself caught up in what would be frightening and unpredictable and anxiety provoking ideas about the future and wanting to have a plan in place should things change, right? So navigating those waters and then trying to walk that line has been a challenge. But I think that we’re striking a balance. There are times when I get overwhelmed with concern over what things might look like two years from now, five years from now. We’re all getting older. Circumstances change in unexpected ways. So trying to anticipate those changes or trying to mitigate the risk associated with those kinds of changes, like, that’s where I think we are at right now. Making sure that we have some kind of reserves or alternatives if things change. Other ways of doing things should things change. And those are difficult conversations. I’m not going to minimize the enormity of those conversations. They’re very difficult, but I think they’re important to have, right? So, I try to not always successfully, often actually often not successfully try to keep my emotions as much in check as I can, so we can think practically and logically about what we need to do. But they’re very difficult conversations to have.

BILL: And your emotions are your emotions. That sometimes tears is about all you got. Then you just have to have it.

BROOKE: Especially my standpoint. I can’t really release emotion in any other way. Right. I can’t punch a pillow, scream, or go for a run or do exercise or anything like that. They all just kind of sit on my chest and on my shoulders. I cry very easily. 

[MUSIC IN]

BILL: Those times of darkness can be part of the healing process, in which you need to go through the dark to see the light. And although bodies can be broken, the spirit is resilient and everlasting. Brooke’s story shows that being a quadriplegic doesn’t have to be all-consuming, full of regret, and limited. Brooke’s strength to challenge everyone’s perspective and stick to her values, created a life with so much hope and opportunity, with Jean at her side thriving together.

But as we know, it’s not always that simple. If you or someone you know is in need of caregiving support, call the Family Caregivers of British Columbia Caregiver Support Line at 1-877-520-3267. As we close out this two-part series with Brooke and Jean, Brooke offers her final perspective on what it’s like to be on the receiving end of care.

[MUSIC CONTINUES]

BROOKE: Accepting some of the changes that life gives you that, uh, requires you to Be on the receiving end of care, to be a receiving care recipient. That level of transition in and of itself can be extremely difficult. It can often be the case that the frustrations embedded in that process are taken out on the people who are most directly close to you, rather, the people who are closest to you. And that is often a mischaracterization of the frustrations that people feel and be patient with those to understand where they come from. I know, speaking from my own vantage point, that I could never quantify the amount of love or support that my parents, particularly my mother, have given me that made my life possible, that have made, um, me doing the things that I’ve done with my life achievable. None of those things would have happened.

They would never have been realities without the involvement of my parents and the care that they’ve given me. I know that it is direct products of their love and support, and I could never repay that. I could never sufficiently offer gratitude for that. But I hope they know how very much I understand that and appreciate that and know that my life would have ended a long time ago were it not for their involvement in my life. And I think that’s the case probably from any people who receive care, that sometimes their gratitude is so immense it can’t even be described, right? It’s almost the backdrop in front of which you have to live your life. And I think it frequently goes unstated because it’s so much a part of the thread that you live within, but it’s there.

[MUSIC DEVELOPS // OUTRO]

VOICE-OVER: Thank you for listening to “Caregivers Out Loud”, powered by Family Caregivers of British Columbia and hosted by Bill Israel. Produced and sound edited by Organized Sound Productions. We acknowledge the financial support of the Province of British Columbia and the BC Ministry of Health – Patients as Partners Initiative.

If you like what you’re hearing, discover more episodes, and find more caregiving resources at familycaregiversbc.ca. And if you find these episodes helpful, please share them with your family and friends who may find it enlightening to hear these stories.

Finally, don’t forget to subscribe to our show on your favourite podcast listening app, so you can take us with you wherever you go. Thank you for listening and taking the time to learn and care for yourself with other caregivers, out loud.

[MUSIC ENDS]